Accessing Healthcare: The Experience of Individuals with Autism Spectrum Disorders in Maine

Previous research has revealed that children and adults with autism spectrum disorders (ASD) are significantly more likely to have both unmet healthcare needs than those with other disabilities. In addition, they are more likely to have difficulty accessing primary or specialized medical care. Minority status, living in a rural location, and low income can exacerbate these disparities. Other obstacles to effective healthcare for individuals with ASD include the following: (1) severity of symptoms associated with ASD; (2) lack of knowledge or skill by medical practitioners; (3) lack of access to comprehensive healthcare supports or a medical home; and (4) lack of access to health insurance for needed supports and services. Individuals with ASD of all ages are likely to have a range of other medical and psychological conditions, making the need for comprehensive healthcare imperative. The University of Maine Center for Community Inclusion and Disability Studies (CCIDS), Maine’s University Center for Excellence in Developmental Disabilities, and the Maine Developmental Disabilities Council have published a research report, Accessing Healthcare: The Experience of Individuals with Autism Spectrum Disorders in Maine (2014), that reveals promising positive trends, as well as areas of concern, in healthcare access for children and adults with autism spectrum disorders in Maine. The Maine Developmental Disabilities Council funded research to collect information about the experience of accessing healthcare from 85 parents of children with ASD and 22 adults with ASD or their guardians who live in Maine. A consultant conducted structured in-person interviews to collect the data and the University of Maine Center for Community Inclusion and Disability Studies’ primary researcher, Alan Kurtz, Ph.D. Candidate and Coordinator of Education and Autism, analyzed the method, data collected, and reported the results. Report co-authors include Angie Schickle, Margaret Carr, Marnie Bragdon-Morneault, Susan Russell, Debra Rainey, Jill Downs and Nancy Cronin